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Active member
Mar 19, 2007
hi everyone! been awile--so many changes. a year ago, xmas was festive, i was strong enough to nurse my mother back to health and hope and strength were plenty. since i have been diagnosed with als, lost voice, have hands that hardly work, had a peg put in for meds and hydration and, have a wheelchair because im so unsteady.

i cry. is this my last xmas? i want hope and have a positive attitude, but i think about how my girls have a useless mother like me.


Jen, hi! I do not believe we have ever shared posts before, but I am pleased to get to know you. Please, do not look at life from the negative side. Als is here, it strikes the best of people, and we must try to make the best of it with whatever time our Father gives us on this Earth. I lost a son to Als 6 months ago, but I never saw him as a useless son. Instead I saw him as a courageous warrior, who brought the family so much closer. He taught us so much. He touched so many hearts. He became our "hero," because he withstood this damn disease, he stared at Death straight into the eye, and proved to us that Death was not going to intimidate him. He took it as one of God's plans, and waited for the day whenever he would be called Home, and he was called Home on June 3, 2007. You are still the same sweet, nurturing mom to your girls, I am sure that is how they see it. May God bless you!

Oh Jen I am so sorry that your health has declined. As for useless, I doubt it. you may not be able to do all the physical things but you are here for them. I am sure it means
the world to them. I do not know how old your girls are, but they dont have to be
so old. You can let them brush your hair or paint your toenails. Getting fussed over is
one of the great experiences of life. It is great to be on the recieving end and it is good
to be the giver. I will say a prayer for you. Cornelia
Hi Jennilee- sorry to hear about the bad patch you are going through. I can't imaging having such a huge life-altering event going on in your life without feeling down at least some of the time. If the mood lasts much longer, why not ask your doctor for some anti-depressants? You and your family deserve to be able to enjoy your holidays. Cindy
jennilee Please dont say your useless,that would mean we all are that arent what we used to be. But I now know I lost my use of my speech but became a better listener,I lost the use of my arms to hugs so now I kiss alot. I lost the ability to take long walks so I take long drive with the man I love I cant run and play with the grandkids so we sit and color .Life is what you make it Dont let Als rule your life You rule ALS, Sometimes we need alittle help with a antidepressant Ask for help. Dont try to be a hero. God Bless Pat
Hi Jennilee -

I am so sorry about how you feel. I care for my best friend and she is anything but useless to me. She can talk, eat and use her hands, but that is all, and that is deteriorating. Cannot turn over in bed, bathe, use the bathroom - etc.

But I cannot imagine my life without her. Her mind is so vibrant. When I go out I rush home to talk over my day with her. I am always delighted that she is there waiting for me. My husband and I both thank our lucky stars that she is in our life.

If I feel that for my friend I cannot imagine what your children feel for you. You are so much more to them than your physical abilities. They will always rely on your counsel and your caring. They are learning from you every day - don't doubt it for a minute.

I, too, echo the others. Many neurological illness have a concommitant depression - very common in ALS. Give antidepressants a try - see if they bring you back closer to your normal self. You have nothing to lose.

One point to remember, though - Don't give up too soon. If one med does not work - another might. The science is not advanced enough right now to predict which med is best for which individual.

Good luck and please check back in - I would like to hear from you.

Take care - Beth

P.S. - I cannot pretend to imagine the anguish of your physical losses - but I have drawn so much hope from Mike who posts as Quadbliss on this site. Look up his posts - go to his website. Maybe you will see something there that can bring you some meaning.
Jen,my heart just aches for husband is in the late stages of als and im not even sure if he will make it untill xmas.I can only echo the thoughts of the posts before me.I never think of my husband as being useless we are all so much more than physical beings.I remember years ago reading a lot of books by wayne dyer and he so explained this and i often think of those books and some of the things that he said and i must say that it altered the way i looked at life.I cannot remember the name of the books that i read.....but im sure someone on here does....Christmas is so hard for people who are suffering and i pray that you will find a way to see the world through your childrens eyes and discover the beauty that they see in you and in the world in general.....hope this makes sense...god bless.....Gina
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